Hi Ramade how are you , haven’t spoken in a while.Unfortunately mets have been found in both lungs and on chest wall .So hopefully will be starting another treatment, feel like I’m back to square 1 .Disappointing but that’s cancer for you , so feeling pretty down .x
Morning ,yes it is secondary breast cancer .I believe it’s stage 4 grade 2 .I also have a large tumour at bottom of spine , it’s a scwannoma .Had a biopsy on that too , pain was excruciating. It’s also called a nerve sheath tumour .lets hope our scans go well x
Thank you for your reply ..can I ask what cancer did you have when you had biopsy .they are saying it's secondary breast cancer that why they have out me on these drugs ..If the tumours haven't changed or got bigger I will go on different drug ..did they say what grade yours was ? I'm get so much pain still but having a infusion anthasetic do fingers crossed .
Take care x
Hi Madonna , Gosh same thing happened to me , they kept saying it was a trapped nerve , I was in so much pain knew it had to be something else .It took 6 months for it to be diagnosed.. They were reluctant to do biopsy , but they did manage it , yes in pain with my arm , plus hand and fingers .We are having same treatment, been on ibrance and letrozole for over 2 years now .Let me know how your scan goes , I am having mine Thursday. I Havnt come across many people, with our diagnosis .Will keep my fingers crossed for you , that scan goes well x
Hi Remade sorry your going through a rough time ..like you I have been in terrible pain as tumour wrapped round my nerve .st Catherine's hospice are now doing my pain and it's slot better but pain and pins and needles pain are there all the time ..they are going to try a anathetic infusion .if it works I should be pain free fir 3 months 🤞 but he said our pain is quite hard to treat . I have tumour also on my T3 as well but they don't seem to mention that one they just say cancer markers are normal so I'm stable ..scan today so 🤞 it hasn't spread ..take care
Hi Hannah they tried twice but they had to stop I have good pain threshold but nearly passed out he said that the tumours is wrapped round my nerve .Do your have any problems in your arm? I have now lost use of arm and my hand has curled up ..I had these symptoms two years ago and they sent me round the block and said it was trapped nerve ..if they had done a brochial plexus scan they would have seen I was so angry that know one listened to me .I have a great oncologist now and even she was cross and she knew what it was straight away . What drugs are you on ? I'm on Imbrance letrozole but it has worked .and think they have a small tumour under plexus so strangling nerve .I have scan today do I'm really nervous about what they find ..it's not in my organs ..how long have you had treatment and is it working ..x
Best wishes Cheryl x
Hi Madonna , my cancer also returned in brachial plexus after 19 years .I did have a biopsy on mine , it can be quite a difficult procedure, but I wanted it done
Hi just joined on here my cancer returned after 18 years and returned in brochial plexus and T3 on spine ..they couldn't do a biopsy so are treating as secondary breast cancer ..can you did you have a biopsy ?
oh Hannah, so sorry to hear your news but hopefully your cancer will have stopped or gone down.
Wonderful news on your daughter's baby though, hope all goes well.
sending you love and hugs
Hi Ramade well got my results on spinal tumour, it’s still growing, it wasn’t what I wanted to hear .Hospital want to remove it next month , am not rushing into it .I would rather have another scan after Xmas and I guess if it’s grown again I have no choice .Its such a challenging op , which could leave me with all sorts of problems.Also I have to stop my cancer treatment, a few weeks before the op , and stay off them until I heal .A lot to think about .I have my pet-ct scan October for my cancer , to see if it’s stable .One thing at a time I think .On a happier note , my daughter is having a baby , due date today .Am so excited, takes my mind off things .Enough about me , how are you doing hope things have improved xxx
Hi Ramade what a disappointing day , travelled up to London, and my mri hadn’t even been reported on .it wasn’t my usual consultant, he was rather embarrassed, and I said it had been a pointless journey for me , and he agreed with me .Waiting for results, is so stressful.He promises to phone me within 2 weeks, as he will chase them up . We will see .Hope your feeling better in yourself Ramade.Take Care x
Hi Ramade how are you , I am off to London shortly, to see if spinal tumour has grown .I am really hoping not , I could do without the surgery, with everything else going on .Petscan October to check on cancer , and to see if treatment still working,Will let you know outcome of my trip to London today .Chat Soon xx
Hi Ramade poor you that’s hard having mashed up food etc .Hope medication helps with pain .Hopefully things will improve for both of us .lovely to hear from you x
Hi Hannah, good to hear from you, hopefully you won't have to have operation on your spinal tumour then,
I am ok, still on Capecitabine. I do have a large lymph node on left neck which has grown and is pressing on nerves in my face and neck so am on lots of pain meds.Also I have trouble swallowing and have to eat mashed food. Lastly my balance is off because cancer is pressing on my inner ear, i'm still hoping that this meds work though. Hubby makes lovely mashed food for me and i'm really big on bananas.
Keep in touch, hopefully you'll have good news.xx
Hi Ramade how are you doing .Just thought I would give you an update ,yet again booked in for another mri on spinal tumour 20th july .If it's grown then op has to happen, which could leave me with more problems .I really hope it hasn't ,then maybe it could be monitored .Hospital called yestererday ,to say tumour markers have gone up ,so got to do more bloods .l thought cancer was stable ,who knows . I am ok though I think lol xxx
Hi Ramade at least your keeping busy which is good .My second grandchild due September, so I have to keep as well as I can Will let you know when I get MRI scan done on spinal tumour.Back up to Marsden next week for check up , am so busy with appointments, I don’t have time to be ill.Lol My consultant there , will have heard back from other hospital, so it will be interesting to see what she thinks .Chat soon stay well xx
oh that's good, London hospitals seem to be good. I am staying on cape for another 6 weeks at least. it's keeping some stability but on mashed or liquid food only because there is a lot of cancer in the salivary glands. They say they are going to do a close up of neck and lower face as apparently it is very difficult to decipher what is there because it's an area with a huge amount of nerves and main veins. I'm ok for the moment though, knitting a lot for new grand babies.
love to you
Hi Ramade thanks for reply, yes I thought exactly the same thing lol .Cancer is bad enough without this on top .I am under London hospitals , the consultant is really nice and says it is unusual to have both these problems.Its a neurology hospital, so I don’t think 2nd opinion would help really .I was just having a bad day yesterday, having a why me moment. Your support really helps so much .Anyway enough about me , how are you doing xx
Oh Hannah I am so sorry to hear this, as if the wretched cancer isn't enough. Could you get a second opinion at all or are you at a good hospital already. I have found they vary. Do you have a date for your op as I would like to keep up the support for you. I live in the Bath area, are you near?
Hi Ramade been feeling a little down .Good news and Bad news .Had my petscan done about 3 weeks ago , cancer appears to be stable which is great .The spinal tumour I have isn’t cancer , but a large scwannoma in my sacrum.It will need to be removed, as I am at risk of in continence, which I could do without.Have been told I need to stop cancer treatment for 2 months , which I really don’t want to .Have been told also will be left with a limp after op ,and constant pain in hip .Plus can’t guarantee I won’t be incontinent anyway .A very challenging operation apparently. So a few tears this week, but these things are sent to try us .Another scan on spinal tumour in 3 weeks, then I will decide what I want to do xx
Hi Ramade lovely to hear from you .I will stay positive for you too let's hope everything is good for you .I still hadn't had surgery yet ,they have decided to do a pet scan 9th May and see how much tumour has grown ,if at all .So will have to wait for results of that.Have been suffering with back pain ,ever since biopsy ,am tryi g to ignore it .Also having problems with eyes ,painful to sunlight ,constantly watering .Apart from the old joint pain ,am not too bad, i seem to take one step forward and two steps back lol Let me know how your appointment goes ,and will let you know how pet scan goes .Hopefully cancer behaving itself ,don't want any surprises .Chat soon
Hi Hannah,wondering if you've had your surgery yet. I have a huge lymph node on the left side of my neck,under my ear. iThere is cancer in it but i'm hoping it has swollen more because the cancer is clearing through there since I've been on capecitabine. Maybe i'm being stupidly positive, scan in 3 weeks. It's really painful.
let me know how you get on, thinking of you
Hi Ramade yes will let you know about cyberknife , when I find out more about it .No idea of surgery date yet , not looking forward to it .I would rather they monitor it , hasn’t caused any problems for me .Keep me posted , about how you are getting on .Thinking of you 😊
Hello Hannah, looks like you're having a rough time, i do hope your surgery goes well on the sacrum.
Interested about cyber knife, i asked if the cancer on my shoulder and neck could be cut out or radiated but they said it's in too deep and too many nerves there. let me know how you get on, thinking of you
Hi Ramade , gosh can cancer just change like that .I had biopsy done at last , they tried to do it under local , pain was excruciating, and I can tolerate most pain .Had a general a while after as they realised it was really painful .The tumour on sacrum, is a benign scwanoma.Thats the good news , unfortunately it still had to be removed, as is so large , it will damage my bowel and bladder .Also surgery could also do that .Cant win can I lol .Having pet scan may 9th to see how cancer is doing .We mustn’t give up hope , my consultant mentioned something about cyber knife , on brachial plexus area . Only a small area though. That’s in the future possibly. let me know how things are going for you , thinking of you xx
Hi Hannah just wondering how you are. i have been told my cancer has become triple negative which doesn't seem very hopeful. i am back on cape now but not sure it is working.i am feeling really nervous about it which is giving me rapid heart beat.
hope you are doing better
Hi Ramade was getting worried about you .Yes all treatment was stopped, until I felt stronger .Back on letrozole only .Having biopsy March 14th , will let you know how it goes. Hope your feeling a lot better too .They now think tumour on spine , might be low grade cancer . Will wait and see .Speak to you soon xxx
oh Hannah so sorry to hear that, i hope you are feeling better now. i have been in hospital for a week with dehydration, stomach infection and gastritis due to capesitabine. Not back on until 7th March to allow me to recover. Hopefully they are giving you a break too.
hugs Ramade xx
Hi Ramade not been too good , have been in hospital with pneumonia.Am home now , but still feel quite weak .So oviously spinal surgery and cancer treatment have been on hold .Hoping to have biopsy on tumour in March .So just got to get myself better. How are you doing , better than me I hope xxx
Hi Hannah, ggod to hear from you. Don't worry about the biopsy, I had one deep into the neck, he anaethatised the area first and i only felt pressure.
i,m hanging round the treatments thread at the moment struggling with capecitabine side effects but pleased it seems to be working.
good luck to you
Hi HANnah, my results were not good yesterday. Huge lump in neck, doctor is asking about radiation possibilities. Looks like I'll be on harsh chemo all over Christmas and most of year, it's paclitaxol that I had 18years ago with my primary. They are having a team meeting next week and I am to go in on Thursday to see what decision has been made.
Is it you that talked about cyber knife possibility and is that the same as proton beam? I thought I would ask if that is a possibility because the neck sounds a bit risky to be.
Hope you're not having heavy chemo too, you thought you might.
There is 1 immunotherapy that gotten a patient with stage 4 breast cancer "cured" it has been 2 years + and there is no sign of cancer coming back. It was headed by Steven Rosenberg at National Cancer Institute (USA). You should check that out. Unfortunately i cant apply for my wife as it is open to USA citizens only. 🙂
Current immunotherapy (CAR-T cells) only work best on liquid tumor. The immunotherapy i mentioned is under phase-I trial by Stanford University School of Medicine only.
Thank you and Ramade for the reply.
Didn't they have booster jab to boost the production of white blood cell or blood transfusion? If stopping treatment to have whiteblood cells going back normal won't it take quite awhile?
Anyway my wife tumors on Brachial plexus are all only 1mm to 2mm. So i'm sure they are not wrapped around the nerves. Maybe is due to the difficulties that the doctor does not dare to operate. Anyway i will be visiting her tomorrow. I will try persuade my in-laws to seek 2nd opinion...
Did you guys try Keto diet?
Also are you guys aware that there is a new immunotherapy on CpG with Anti-OX40 (Cancer Vaccines) that cleared all solid tumors (Breast & Colon. Single or Metastasized) on 90 mice. 87 of them have all their tumors cleared and the 3 of them have theirs cleared too after 2nd treatment and have no recurrence. Now it is in phase 1 trial on Lymphoma patients only and results will be out Oct 2020.
Hi Hannah, so sorry to hear this. Hopefully if they do operate they will take it all away from the sacrum and you will feel more comfortable. i had mri on Wednesday whole spine and brachial plexus, i know it's got worse just hoping they can do something and not a heavy chemo all over Christmas. i'll let you know.
thinking of you